When the hope for a cure causes unexpected doubts
We'll need kindness and understanding in order to face whatever comes next
Written by |
The recent news that UniQure plans to ask the U.S Food and Drug Administration for accelerated approval of the experimental gene therapy AMT-130 to treat Huntington’s disease (HD) in the next few months caused my wife, Jill, to admit something that startled me.
Jill, who is gene-positive with HD, said that sometimes she thinks a cure for this neurodegenerative disease will never come, and in a strange way, she isn’t sure how she feels about the idea of a cure at all. Huntington’s has been shaping our lives for years, and while I often picture a future where a breakthrough finally arrives, she confided that she imagines that future and feels oddly uncertain.
She shared this with me while we were taking a walk after the news broke about the most recent development in the back-and-forth saga of AMT-130. “I know it sounds awful,” Jill said, “but sometimes I wonder what I would even do if they suddenly announced a cure. I’ve been living with Huntington’s for so long that I don’t know who I am without it.”
At first, her words felt almost like a betrayal of hope. So much of our energy is built around the dream of better treatments and the idea that science might move fast enough to matter for people who are alive today. Families raise money and awareness so that someday no one else will have to face what Jill is facing. How could she question whether she even wanted a cure?
Then I realized she was voicing something many people with chronic or progressive illnesses feel but rarely say out loud.
The emotional landscape of living with HD
From the moment of diagnosis, HD begins to shape everything. It changes how you plan your career, whether you have children, where you live, and what your days look like. Over time, the disease isn’t just something you have; it’s woven into your routines and sense of self. The brain changes that come with it affect movement and thinking, but also emotions and personality. When your brain has been altered by a disease, it makes sense that your identity feels altered, too.
So when Jill wonders what a cure would mean, she isn’t being ungrateful or pessimistic. She’s wrestling with a paradox. HD threatens her life, but it has also shaped the person she is now: the advocate, the friend to others with HD, the woman who speaks honestly about fear and resilience. A cure would give her time, but it might also ask her to rebuild her identity in a world that always assumed she would keep getting worse.
We talked about how the mind copes with long-term uncertainty. One way is to lower expectations so disappointment hurts less if hope is crushed again. Another is to build meaning around the life you have now, rather than the life you might have someday. For Jill, both strategies show up. Some days she is fiercely hopeful about research. Other days she protects herself by imagining that a cure won’t come in her lifetime, and then tries to make peace with that.
There is also a biological layer to her feelings. HD gradually changes the brain circuitry involved in mood and decision-making. Depression, anxiety, and apathy are common companions. When Jill says she isn’t sure she wants a cure, part of that may be her altered brain chemistry speaking. It doesn’t make her thoughts less real, but it does remind me to meet them with compassion instead of judgment.
During our conversation, I told her it made sense to feel conflicted. Wanting relief from suffering and feeling afraid of change can coexist. You can long for better treatments and still feel unsure about what a different future might demand of you. I reminded her of the people in the HD community who, like her, have found purpose in supporting others, and how that purpose won’t disappear even if a cure is found.
By the end of our conversation, Jill didn’t have a neat answer about whether she wanted a cure. What changed was the way we held the question. Instead of treating it as something shameful, we treated it as part of the emotional landscape of living with HD. Science can explain how a faulty gene drives the disease and how researchers are inching forward, but it can’t tell us how to feel while we wait.
That night, as I turned off the kitchen light, I thought about all the people like Jill who are trying to make sense of a life in the shadow of a disease with no cure, at least not yet. If a breakthrough does come, it will be celebrated for the lives it can save and the suffering it can ease. But it will also ask people like Jill to rewrite a story they have been telling themselves for years.
Until then, our hope is not only for a cure, but also for the kindness and understanding we will need to face whatever comes next, one honest conversation at a time.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Huntington’s disease.
Leave a comment
Fill in the required fields to post. Your email address will not be published.